How can I get IDC and die all in just a matter of months?

Twodigit67

Had my appt. with my new team of doctor's yesterday, surgeon, oncologist etc.  Had to leave most of my family in Oklahoma and come to my youngest daughter's in Georgia to get treatment and I am so very homesick and it has only been 2 weeks and over a year to go.  So I asked my oncologist how long I would have if I decided to go home instead of staying for treatment.  He told me I was "Special", because they don't normally see my cancer in anyone my age (45), IDC triple pos 3+ very fast and aggressive.  He also told me I have only had BC for months not years, but that it's has been doubling every few weeks and without treatment it would matastise to anywhere and I would be counting my time left in months not years.  How can this happen so fast?  So within a year or so I would go from not having cancer at all to dying from it!!!  I really don't feel very special!!!!  I also have discovered that the penny pinching jewish ancestry I have always been proud of also may have given me and everyone decended from me or closely related to me possibly has a mutated cancer gene and this could happen to any of them, including my beautiful daughters and grandchildren.  Well isn't that great, heck of a legacy to leave them, huh? And the test to verify the gene cost $4000 and insurance doesn't cover that, so now their lives will always be in limbo unless I manage somehow to get the test.

flannelette

Just to say "I hear you". But it might help to get some answers here if you could tell us what your stage is, if you know it? ie - stage 2? do you know that you've metastasized? There are herceptin & tamoxifen for 2 of those positives. There are mastectomies (which, from my experience, are NOT painful). There is chemo - doable. and radiation. wouldn't you rather be around for your lovely girls, than go home right now? Yes, I believe it's called the Ashkenasy family BRCA gene, and so sorry you possibly inherited it. Some very knowleabgeable people will be along soon to give you solid information...I do not know much about that gene (though was tested for it but came out negative) but it seems to me that 45 is not terribly young for any kind of bc.

Big hugs, and treat yourself gently...till some good advice comes along.

ps I had a whopper IDC, very aggressive, and guess what...here I still am!

peggy_j

Twodigit67, sorry you're going through this. I don't know enough about your Dx to comment (since it's so different than mine) but my understanding is that people with the BRCA gene are often Dx'd when they are young (I know women in their early 30s who were diagnosed).  I wonder if your can appeal the insurance company's decision not to cover the genetic test. My insurance company will not cover it for everyone but it will cover it if you're likely to have the gene. (fwiw, the cut-off age was 45, and I was Dx'd at 46. I had no other factors that suggested I have the BRCA gene). Also, I think it's rare for a patient to have no treatment at all (not even surgery) so I'm not clear how much data they have on survival rates for patients who refuse any treatment. I wasn't at the appointment but the comments you relay sound like the doctor might discussing the worst-case scenario? I don't know. (based on what you said here, if it was me, I'd seek a second opinion or at least try to find an MO with a more even-handed way of discussing this).  FWIW, you are welcome to continue posting here, but as an FYI, there are other forums below for patients with the BRCA gene and also for HER+ (including a thread on triple-positive). So even though this may not be the most common type of BC out there, you can touch bases with those that have a similar Dx and may be able to learn what worked for them. 

sheila888

Twodigit.......I'm sorry you are homesick........

I was DX with Triple+ also....

There is something I don't understand......If you need to have your treatment in Georgia it's fine....I assume you will have Herceptin for one year...Can't you have that in Oklahoma......

good Luck to you.

CherylinOhio

Sorry to hear about your situation.  Insurance companies are so fickle, I had the BRCA done and my insurance co never batted an eye at it.  Maybe you can work on getting yourself treated and strong again and in the meantime save a little money each week or pay period towards the test.  Are there any agencies near you that can help?  Do some research online about cancer help, there may be an agency out there that can help you with the money for the test.  Good Luck!!

DivaRedefined

My insurance company refused to pay for testing initially, but my doctors wrote a letter on my behalf which worked. Sorry about your situation. Please remain encouraged and know that women are surviving and thriving each day in spite of their diagnosis.

barbe1958

Your family will NOT be in danger if you do not get tested!!! You may have the gene and they might not! Or, you might not have the gene and they might from your husband. It is very fickle, like you said. I, also, do not see why you have to get treatment away from home. I also do not like your doctors attitude!!! Such fear mongering!! You could get treatment and STILL die within that year period or not for 40 more years!!! Get to someone nearer to you so you can be at home and get yourself centered. It is important that you are comfortable with your team and it sounds like you are not. Herceptin is the drug you will take for the full year. It is considered the latest and greatest for HER2+ cancers so you are getting the best to date. Those treatments are normally infusions once a month, are yours?

dlb823

Twodigit67 ~ I'm so sorry about all that you're going through.  One thing that jumped out at me from your post is the fact that your oncologist told you he doesn't normally see triple positive breast cancer in someone your age, which leads me to wonder how much breast cancer he actually treats.  I tell women over and over that it's very important to be sure they are dealing with breast cancer experts -- docs who treat only bc every day -- especially if their type of bc is one of the less common ones.

Is your oncologist at a major medical center?  If not, I would encourage you to either try to get a second opinion at one (I know insurance is an issue from your previous posts), or at least be sure your oncologist is really up on treating triple positive bc, since he has already told you he doesn't see that much of it.  Sometimes that's as simple as him getting in touch with one of those larger comprehensive cancer centers to be sure he's following the very latest protocol.

Here's a list of those major institutions that see the most bc, so would logically have the most experience with all types of bc, including yours:  http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html       

Good luck!    (((Hugs)))   Deanna

rozem

i agree with Deanna, not sure why they are telling you that your cancer is so rare.  Im triple positive and 42 when diagnosed.  Approx 20-25% of all breast cancers are her2 positive so not rare.  As for being in your forties, statistcally, yes, more women are diagnosed post-menopausally but there are plenty of women diagnosed in their forties which is why sceening starts at 40. 

Perhaps you could get your treatment recommendation in georgia (from a large cancer ctr as deanna suggests) and then have your treatment in oaklahoma.  The treatment for triple positive is pretty standard in the US.    Unless your tumor is extremely tiny you will have to have chemo and herceptin.  The prognosis for us her2 ladies had improved significantly with herceptin treatment. 

please join us on the triple positive thread in the her2 section of this forum - we can answer any questions you might have and see what type of treatments we've had plus meet women who are years out from diagnosis and doing amazing

good luck

camillegal

digit---I'm sorry that u'r going thru this--I totally agree with rozem and Deanna--but what popped out st me was U have to et all u'r treatments there. U get the same treatment a most of us had with herceptin and I really don't like the fact that he did give u the worst possible scenario and I'm sure u can find an Onc, at home thst would be just as knowledgeable or better than what u;r doing.-just sayin........

dlb823

One more thought, Twodigit... Try not to dwell on the BRCA gene possibility.  From being on bc.org since 2008, I have seen very, very few women actually test positive for the BRCA gene mutation, and while you don't say if you have any first degree relatives who have had bc, that would be a huge tip off as to whether it's actually a possible issue in your case.

Here's some trustworthy and complete information on BRCA gene mutations:

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

And here's another website that gives some options for getting tested if you don't have health insurance:  http://inthefamily.kartemquin.com/content/getting-tested#options

Deanna

dcsandpiper

You should try petitioning your insurance co with a letter of support from your docs. I did and they paid for my test. Which was thankfully, negative. 

Good luck and don't give up! There are a LOT of treatment options out there - just be aggressive and go for it.

Shrek4

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barbe1958

Day, I have found by being on this site so long, that people often "run" from the state or province they are in to another one figuring that the one they were in allowed the cancer so they better go elsewhere!! It's a strange phenomenon that I've witness time after time. We even have ladies from Toronto want to go to the USA!!!! Toronto has some of the best cancer treatment centres in the WORLD!!!